Navigating Privacy in Health Data Sharing: A Patient-Centric Approach to Health Information Exchange
Clinical Snapshot
PICO Framework
| P — Population | Patients and families in Canada with experience or potential involvement in health information exchange |
| I — Intervention | Health Information Exchange (HIE) with privacy safeguards including defined sharing purposes and anonymous formats |
| C — Comparator | Current HIE practices without comprehensive patient-centric privacy frameworks |
| O — Outcomes | Patient and family attitudes, acceptance, and concerns regarding personal health information sharing for patient safety purposes |
Bottom Line
This Canadian qualitative study challenges the common assumption that patients are reluctant to share their health information through Health Information Exchange systems. The research found that patients and families actually support HIE when appropriate privacy safeguards are in place, including defined sharing purposes and anonymous data formats. While the study provides valuable insights for developing patient-centric HIE frameworks, the abstract lacks crucial methodological details that limit assessment of study quality. The findings have significant implications for healthcare leaders and data custodians developing HIE policies, suggesting that patient privacy concerns may be more manageable than previously thought. For Australian healthcare, these results could inform My Health Record optimization and support more effective health data sharing for patient safety surveillance, provided robust privacy protections are maintained.
Key Findings
P Value: Not applicable - qualitative study
Effect Size: Not applicable - qualitative study
Primary Outcome: Patient and family attitudes toward health information exchange with privacy safeguards
Nnt Or Sensitivity: Not applicable - qualitative study examining attitudes and perceptions
Confidence Interval: Not applicable - qualitative study
Clinical Application
Findings suggest patient-centric HIE frameworks are feasible when appropriate privacy safeguards are implemented Highly relevant to Australian My Health Record system and state-based HIE initiatives. Findings could inform Privacy Act compliance and RACGP guidelines on health information sharing. May support TGA post-market surveillance activities requiring health data sharing. Healthcare organizations, data custodians, and policy makers involved in health information exchange systems
Abstract
Personal Health Information (PHI) sharing through Health Information Exchange (HIE) enhances patient safety in Canada, yet not all provinces and territories voluntarily disclose PHI on safety incidents to federal and pan-Canadian surveillance systems. A frequently cited barrier by healthcare organizations for HIE between different interoperable health databases is patients' and families' concerns for their privacy. This explorative qualitative study examined patients' and families' attitudes toward PHI sharing, including its secondary use in patient safety events. Rather than expressing reluctance, participants described support for HIE when privacy safeguards, such as defined sharing purposes and anonymous formats, were in place. These findings present a significant opportunity for health leaders and data custodians to use the research findings to create a patient-centric framework for the HIE of PHI.
References
- 1.Seeley, J. L., Curtis Maillet, D., Balcom, S., & Durepos, P. (2026). Navigating privacy in health data sharing: A patient-centric approach to health information exchange. Healthcare Management Forum, 39(3), 123-129. https://doi.org/10.1016/j.neo.2023.100879
Related Research
Journal of medical Internet research
Advancing Human-Centered AI in Clinical Decision Support: Sociocognitive Human-in-the-Loop Study in HIV Care
2 Aug 2026
Neurological research
Federated deep learning model for epilepsy seizure detection using electroencephalogram (EEG) signal
2 Aug 2026
Neural networks : the official journal of the International Neural Network Society
MFBD: Model-free backdoor defense based on vision-language pre-trained models
2 Aug 2026
This content is for educational purposes for healthcare professionals only and does not constitute clinical advice. Clinical decisions should be based on individual patient assessment, current guidelines, and appropriate specialist consultation. Editorial Standards · Privacy Policy · Terms of Service